Just diagnosed

Proud, 

Although I am glad you found us, I am sorry you are here to start with. As MG mentioned, try to stay calm and please stay away from Dr. Google. A lot of the information out there is out dated or has bad information. Your Doctors will narrow everything down for you. As mentioned, there are a lot of survivors here willing to answer your questions and offer suggestions down the road, all you have to do is post them. 

Like you, I felt fine but one day I found a small bump under my chin. It didn't go away after 2 weeks so I went to my Family Doctor and the rest is history. I am now a 16 year survivor of Base of Tongue cancer. Please keep us updated.

My Best to You and Everyone Here 

My words of wisdom, go to the best.  Often local not up to date.  I went local & regret daily.  Was over dosed for the 7 weeks for HPV skin over left tonsil didn't have tonsil.  No tumors, no lymph now know great place in TAmpa they would never of done to Me what they did.  No info just pushed to start immediately since traveled all over Europe full of energy, strong no symptoms nothing for 3 yrs no Dr was concerned felt great,  but told I would die if didn't start with them immediately.  If knew about Moffit in TAmpa wouldn't be in My position.  Side effects miserable.  Had to have feeding tube, due to major radiation burns from old marchine.  .  So PLEASE go somewhere good & really push you want quality of life.  I'm on 5 yrs in horrible pain & no help cause IM alive, their words.  So suffer daily throat fried, no saliva, thyroid, long list can barely eat.  My kids older but time to really enjoy My adult kids but can't since 1/2 time lose voice from pain.  Can't gain weight can't swallow well from bad scar tissue so tender & even choked on scrambled eggs & water.and 1 slice of banana another time.  Scar tissue everywhere and gave 2 Chemo drugs & 1 ruined my insides.  I'm really not asking for pity or scare you but why I push better Center or Hospital........very importat.    Really good luck to you.  Hope all works out.  Can beat this for your daughter but doesn't need to be as hard as Me........bad Drs & radiation machine doling out high doses & 2 drugs.  Good luck.....this board the best will learn so much since wasn't getting info, they helped so much as I went thru.   Daisy

As others have said, first step first is to determine whether you have HPV related cancer.  I'd bet you do.  If you do, you've likely caught it very early and it's extremely responsive to current treatments (surgery, chemo and radiation).

I was diagnosed at 41..had a lymph node on my neck swell up.  They did an FNA which showed squamous cells...later HPV testing was positive.  Had my tonsils out and they did a shot in the dark biopsy at the base of my tongue and got a hit (these are the most common locations for HPV head and neck cancer).  Neck disection to remove the cancerous node and check others for spread...  Then another surgery to remove the tumor from the base of my tongue.  Followed by 6 or 7 weeks of radiation...don't even remember now, lol.  Worked my office job all the way through.  Only missed a few days post surgeries.

It's not easy by any means but I'm now like 4 years out and beyond some neck stiffness and random stuff I'm basically the same as I was before.  One day at a time and hopefully you'll be on the road to recovery before you know it.

I second other peoples suggestions on going to a good center.  I prefer an academic medical center where all the different specialists work in coordination (Oto, Oncology, Rad Onc).  An NCI designated center is the best.

Good luck.

There's a lot you still do not know about your problem. Thinking worst-case scenario just compounds the worrying/stress, and is pointless- serves no purpose. Take it easy until the ENT gets the PET/CT results and what the Dr.s have to say about their plan. "Fragments?" I take it you had a surgical biopsy? If not, then it might be nothing. I knew something was wrong almost a year before the lumps showed- weight loss. And that was nearly 13 years ago. C treatment has advanced, big time. I ditto the going to a major C Center, even if just for a 2nd opinion and to have them decide the best course of treatment to rid you of the C. I should have gone to the U of Iowa, instead of the local locos- became Feeding Tube dependent a little over 9 years out from overkill on the Rads to the base of my throat for NPC. NPC is nasal- the 2 lumps were on my throat, though. 

Come what may, proud dad, using your head to get the best treatment to rid you of the C, and keeping it in the Positive.

As a footnote: I went thru it all without a caregiver. Some people get overwhelmed by the diagnosis. Just a bump in the road of life, man.

vwag1r said:

I just recently finished my

I just recently finished my treatments and am in the recovery phase. I had a lump on the left side of my neck. I had been showing some symptoms for some time before the lump appeared but my Dr couldn't figure out what was up with me. Looking in all the wrong places. Finally I had a serious sore throat that wouldn't heal. Went to my ENT and he knew what it was before he completed the exam. I had tonsil cancer that had spread to lymph noids in my neck left and right side. I hadn't drank for 35 years and stopped smoking 25 years ago, thought I was heathly. The cancer wasn't caused by either of those but was caused the HPV virus. I have great Drs who never sugar coated anything. My ENT told me that I would have to go through hell for the next year before he finished my first exam but the prognosis was good. Knocked the stood out from under me but I knew what I was facing. My Radiation Oncologist was even tougher than my ENT and my Chemo doc is a facted filled pleasant inbetween. I got to tell you they were right its been a tough time. I lost 50 pounds and many days it was hard to get out of bed to go to my treatments but I just dealt with that day and didn't worry about the next. This may not sound like encouragement but it is. Even though there have been some pretty dark days with the help from my family, friends and my medical team I made it through the treatments and my latest PET scan was cancer free. This is a fight you can win and when you come out the other end, at least for me, you'll see everything in life different. Get the support you need, listen to your medical team (at times I was a little belligerent to be honest) and hang tough. I just found this forum recently, wish I had found it sooner, and it seems like a lot of those here are willing to share their experiences and to give encouragement.

I hope this ends up being something easily treated for you and you can get on with raising your daughter.

 

One year ago today I had surgery to remove my left tonsil and a bunch of lymph nodes in my left neck.  My cancer was HPV in the lymph nodes and HPV and small cell in the tonsil - my oncologist said that was very rare.  I went through 12 chemo treatments and 30 radiation treatments.  The chemo mostly just made me very tired; the radiation made an incredible mess of my mouth.  I had to use a feeding tube for a short time.  I finished my treatments late October and had emergency surgery December 22 for a perforated stomach ulcer (I believe caused by my feeding tube).  I've lost about 40 lbs. but I was overweight to start with.  I had a CT/PET scan in early March - 100% clear.  I had a CT scan in early June - still 100% clear.  I feel incredibly good.  I have very dry mouth and really don't enjoy eating very much but I believe it's getting better all the time.

What has helped me the most is my faith in God, prayers from so many people, the love and support of my family and friends.  And of course, my wonderful health care team (Baylor Scott White-Dallas and Rockwall, TX).

The radiation really scared me, so when I was going through it I would silently sing the song "One Day at a Time"

I've often heard that when you have someone that really needs you, you will fight really hard to survive.  I wish everyone the best and keep strong.

Logan51 said:

take it easy

There's a lot you still do not know about your problem. Thinking worst-case scenario just compounds the worrying/stress, and is pointless- serves no purpose. Take it easy until the ENT gets the PET/CT results and what the Dr.s have to say about their plan. "Fragments?" I take it you had a surgical biopsy? If not, then it might be nothing. I knew something was wrong almost a year before the lumps showed- weight loss. And that was nearly 13 years ago. C treatment has advanced, big time. I ditto the going to a major C Center, even if just for a 2nd opinion and to have them decide the best course of treatment to rid you of the C. I should have gone to the U of Iowa, instead of the local locos- became Feeding Tube dependent a little over 9 years out from overkill on the Rads to the base of my throat for NPC. NPC is nasal- the 2 lumps were on my throat, though. 

Come what may, proud dad, using your head to get the best treatment to rid you of the C, and keeping it in the Positive.

As a footnote: I went thru it all without a caregiver. Some people get overwhelmed by the diagnosis. Just a bump in the road of life, man.

I agree with Logan.

Yep, lots of us have to go through and Continue to go through with No caregiver. No one.  No one going to appts with us, no one taking us to biopsies, or even to the Emergency room at times ( and being admitted, have to find someone to go retrieve  my vehicle from the Emergency Dept parking deck!!)... Ah well, so it goes.

And yes, I'm at an NCI/ NIH Comprehensive Cancer Center. It's one of only 47 in the nation and it's been continuously accredited since 1990, every year. It's the #1 Cancer Center in this state. And we are highly ranked for head and neck cancer..

Also, in the height of the pandemic last year, our comprehensive cancer center did not miss a beat!  Everyone got timely care. In May, 2020 for instance, yours truly had no less than 8 appointments that month, including a PET scan and an all day infusion. It felt like a ghost town at times, but my care never lapsed, not once.

Today I got bad news though--- I just got out of the Cancer Center hospital June 10th for bilateral bacterial pneumonia ( Double pneumonia) and went home with a PICC line to do  12 more days Intravenous antibiotics. ( and Yes, I did them completely alone).... At the end, the home health nurse came and took out the PICC line.

today was my hospital follow-up visit with my Internal Med doctor and---- He heard Crackles and Rhonchi, both sounds, in Both of my Lung Bases, and also prominently throughout my Right lung. 

I still have Double Pneumonia ..... Which  I was aware of already. I knew,  because my cough is still productive plus it's infected....

this is my 6th ( Sixth) pneumonia and it's just not good.

he called my Pulmonary; critical care Team today, after hearing  it in my lungs . To let them know...

Drats !!! I don't know what is next 

Proud dad, here's hoping you can get to the Best possible cancer care. It will then be one less thing to worry over and you can concentrate on doing your best on your treatments.  Having trust in your Team is worth it. 

LitlCJDoll

LitlCJdoll said:

I agree with Logan.

I agree with Logan.

Yep, lots of us have to go through and Continue to go through with No caregiver. No one.  No one going to appts with us, no one taking us to biopsies, or even to the Emergency room at times ( and being admitted, have to find someone to go retrieve  my vehicle from the Emergency Dept parking deck!!)... Ah well, so it goes.

And yes, I'm at an NCI/ NIH Comprehensive Cancer Center. It's one of only 47 in the nation and it's been continuously accredited since 1990, every year. It's the #1 Cancer Center in this state. And we are highly ranked for head and neck cancer..

Also, in the height of the pandemic last year, our comprehensive cancer center did not miss a beat!  Everyone got timely care. In May, 2020 for instance, yours truly had no less than 8 appointments that month, including a PET scan and an all day infusion. It felt like a ghost town at times, but my care never lapsed, not once.

Today I got bad news though--- I just got out of the Cancer Center hospital June 10th for bilateral bacterial pneumonia ( Double pneumonia) and went home with a PICC line to do  12 more days Intravenous antibiotics. ( and Yes, I did them completely alone).... At the end, the home health nurse came and took out the PICC line.

today was my hospital follow-up visit with my Internal Med doctor and---- He heard Crackles and Rhonchi, both sounds, in Both of my Lung Bases, and also prominently throughout my Right lung. 

I still have Double Pneumonia ..... Which  I was aware of already. I knew,  because my cough is still productive plus it's infected....

this is my 6th ( Sixth) pneumonia and it's just not good.

he called my Pulmonary; critical care Team today, after hearing  it in my lungs . To let them know...

Drats !!! I don't know what is next 

Proud dad, here's hoping you can get to the Best possible cancer care. It will then be one less thing to worry over and you can concentrate on doing your best on your treatments.  Having trust in your Team is worth it. 

LitlCJDoll

 

 

 

Pneumonia - how is your swallowing? Do you cough a lot?

Logan51 said:

alone is not an issue

Mike

The footnote was just how I went thru tx, and I was not advising or suggesting anything. There's also no "U" in Cancer, but you got it, as did "I."

Hoping the best for you, proud dad. We are all proof you can get thru this ordeal-like bump in the road of your life. Know you must feel overwhelmed, but just take it one day at a time, and know you will survive- we all do with the first bout of H&N.

 

I never said, or meant, that someone MUST have a caregiver.  I just wrote how I managed my care.  What worked well for me might not work well for others.  And, I am aware that HNC treatments are not as invasive as they were 12 years ago when I had mine. Bottom line, take stock of your needs and the resources you have on hand to deal with HNC and its treatments, and go from there. But, I will stand by my opinion that there was no "I" in cancer for me. This "I" would not be alive today if not for Team Mike.

BeagleDad said:

Another Idea

Some great advice in all these responses.  We each react to this junk differently, of course, and what gets us through differs as well.  Some can work, others, like myself, could not even get off the couch for 3 weeks ...I am STILL amazed about that; I am a busy-type person and just cannot picture myself merely "lying there", but that is exactly what I did.  Praying for sleep to make the days/nights shorter.

But to my point....I have a computer repair business and as such a TON of contacts, friends, vendors, customers, business associates, etc, not to mention some family.  To avoid having to explain everything to everyone every day, and not to scare off my customer base, I started journaling on Facebook about the realites of my cancer.  I was VERY real ..not garnering pity nor sympathy, but to inform those around me how it was LITERALLY going.  The pains, the ups, the downs, the meds, the emotions, all of it.  I was (and still am) AMAZED at the "following" that created.  If I failed to write for a bit, I started getting people asking for more .... they were insatiable.  I think this is due in large part to the fact that friends want to know but do not want to or know how to ask.  

They wanted to share with me and help me, but if they do not know how I am doing then they don't know how to react.  For me, it was positive reinforcement of all the people out there that supported and cared for me .. many of whom I have never met.  They knew of my cravings for a chili dog when I could not eat, they understood the pain I went through post surgery and could picture it for themselves.  I did not just say I hurt, I explained how it hurt, what actions hurt and how I tried to ameliorate them.  My friends and contacts LITERALLY went through this with me.  For me it was a great source of cathaticism to share my experience and know that folks were interested.  And, to boot, I only had to say things once rather than tell every person individually "how I was doing".  

So, if you are a "communicator", consider such.  Not only did I have my awesome wife as primary caretaker (and never underestimate THAT tough job), but I had a whole country full of "friends" helping me get through day to day.  And then there is this forum.  I did not share as much here about my day to day, but did find great support and some EXCELLENT ideas on how to handle things like tiredness, the radiation skin burns, the constipation (One thing often not talked about, but very important to address), and "life hacks" to help some of the bad things be easier.  (Like taping my mouth closed at night to help avoid the discomfort of dry mouth). 

We know you are scared and extremely curious.  Maybe even pi**ed off.  All natural and all "ok" here.  This is a safe place for those emotions as we all understand perfectly. 

As you will read from all of us ..enjoy what you have now.  The eating, the energy, the verve.  You will lose most of it temporarily .... what will seem like ages when going through it.  But there is motivation to come as you begin your healing in the little things like taste, saliva, swallowing, etc.  I am only 4 months post treatment and still have a difficult time swallowing...I have been able to taste again for quite some time, but stuff still goes down hard.  I hear most of that will go away with time, so I just enjoy each day as it comes and keep trying the pop tarts or sour cream and onion chips ... one day I will be surprised to feel that stuff slide right down there like it should!  But for now, well, for now they are just things to anticipate.  

Don aka BeagleDad

Being a professor at the time, like Don I knew a lot of people who were concerned about me and just wanted to stay in the know.  With all of the time and effort needed just to manage the day to day stuff, I decided to start a blog that friends and family could read to keep up with everything, so Terry and I didn't have to make a bunch of calls and texts to do that.  When someone is diagnosed with Stage 4 cancer, no news can easily turn into major worries and fears by those who wanted to know how WE were doing. (Remember, there was no "I" in my cancer).  I kept the blog for 8 years--it took that long for things to reach some level of consistency  with my health and prognosis.  Late in 2019 I decided to use the blog as the basis for a book about my experiences as a patient, then as a survivor coping with many serious side effects. It came out in 2020.  Like Logan51, I am FT-dependent and will be for the rest of my life.  My CSN profile photo is the cover of the book.  You can use that to find it on Amazon and Barnes and Noble.  This is not a plug to make a few bucks from royalties.  All of my royalties are donated to the Head and Neck Cancer Alliance.  Bottom line, it all started with just wanting to keep friends and family in the know. Lots of ways to do that these days, without having to spend a lot of time and energy that you might not have much of.

mike